If you could have told yourself something when you first remember these symptoms arising, what would you have said?
Erm… well other than STOP DOING THINGS YOU BLOODY IDOIT… I don’t know.
I would tell myself, it’s NOT all in your head. DO NOT believe them. You will drive yourself nuts. You will be gaslighted. You will think you are going totally insane. You will have dark thoughts and maybe even wish to do dark things. But you are NOT crazy, someone is telling you you are but that does NOT make it so.
I would tell myself to get second, third, fourth, fifth, hell get all the opinions until someone takes you seriously. That doctors that do not WANT to help you are not worth your time. They are not good people. They will not help you as they do not want to try. Go to another doctor, make a list of doctors that want to help you, that think outside the box, that will look into and investigate the unknown. Make a list of “safe” doctors, stick to it.
I would tell myself that my dad had health insurance that covered me so to go private from the get go. I would remind myself that, although NHS doctors go into the profession with the best of intentions, to do everything they can to help their patients, they are restricting by funding, by red tape and trust rules and regulations. Privately they have many more options, many more resources (if you are willing to pay for them). I may well have got a diagnosis much sooner.
I would tell myself to withdraw from midwifery immediately, maybe then I would have had the ability to go back after intermitting for a year. Maybe then I would not have had all the negativity with my lecturers about my attendance when I was just trying to do my best. Maybe, resting for a year, investigating and (hopefully) recovering, would have prevented the extreme decline in my health and abilities and meant that I could have improved significantly or even, completely. There’s a school of thought within the community that the lower you fall on the ME functionability scale, the lower your chances of a normal life or recovery. Having spent the amount of time I did, at the level I was (landing myself in the severely affected catergory) places my chances of normal life and/or recovery at pretty much nil. If I could have prevented that decline, well, we will never know will we?
I would tell myself to trust my gut. After some research (okay a lot of research) I was pretty sure I knew what was wrong with me. Crikey the diagnosis criteria for ME was practically a Jen tick list. I would tell myself to trust these instincts and to NOT be scared to bring it up with the doctors I was seeing, just in case they looked at me as “the crazy person, she’s been on the internet too much”. I mean, hell, they were already looking at me like that anyway weren’t they? What was there for me to loose at this point? Really?! Even if those doctors hadn’t listened to me, even if they hadn’t taken me seriously, if I had taken MYSELF seriously there was things I could have done. Even if I had just learnt about pacing, and not overworked myself even more, it might have stopped me dropping so low on that godforsaken scale. There were things I could have learnt about restricting light, sound and social interaction when I was feeling like I couldn’t cope with it. There were vitamins I could have taken. But nope, my solution was to work harder, do more, PROOVE that I wasn’t lazy, that I wanted to be well. My solution, it seems, was to try and work myself to death, so my body took over and made it physically impossible….. for 18 months.
Although not right at the start of my illness I would tell myself to USE THE WHEELCHAIR. Don’t view it as that horrendous thing that’s a sign of “giving up”or “giving in” don’t see it as a negative because, past Jen, one day that thing you despise so much will be your saviour. It will turn into your independence, your ability to HAVE a life not loose it. And, past Jen, it will allow you that opportunity to do things with your daughter (yes, past Jen that’s going to happen and it will scare the hell out of you but she will be THE. BEST, THING. EVER.).
And I would tell myself that it’ll suck, it’ll be hard, it’ll hurt and you will feel so awful you would swear up and down again that you were going to die. It’ll never be the same, but there IS a life for you. You won’t be the midwife you wanted to be, that social work course isn’t going to work out either (sorry), you won’t be the wife, mother, person you wanted to be. BUT you WILL be a wife (and yes you manage to physically walk down the isle at your wedding). You WILL be a mother (although you’ve been told that can never happen) and, although you have your physical limitations your heart has none. You will love her in a way that you never even thought possible and she will keep you going and give you reasons to fight, to smile. She will love you like no one has EVER loved you. She will be your everything.
So, yes, your life will not be what you dreamed or even could have imagined but you will have more than you ever thought possible, and, I suppose, it’s perfect. In its own way. In your own way you will be happy.
Isn’t hindsight a wonderful thing?